So I was wandering around Target tonight, waiting for one of Jilly's prescriptions to be filled and it hit me: I AM SO NOT READY TO GO THROUGH THIS AGAIN.
I mean, I know that we've known this was inevitable. That this would be coming up. That Jillian absolutely needs this surgery to live, but for some reason... I don't know. Today it just hit me.
JR and I have been trying to abide by this "it is what it is" kind of attitude. We try not to question why this is happening to us, our family, and most importantly why her? Why our little girl? Why are we "lucky" enough to have two kids with heart problems? We try not to ask these questions, because those are questions that will never be answered for us. Not in this life at least...
I try to accept the fact that we've been thrown into this medical world that we'd never have chosen for ourselves and certainly not for Jillian. I try to accept that this is how things are supposed to be, for whatever reason. I try to just roll with the punches- the never ending appointments, medicines everyday, literally pumping formula directly into her little tummy through a tube, keeping our family on lock down so we don't get sick (although this recently was a big FAIL), the constant worry and the guilt, oh the guilt! Because when answers are impossible to find, guilt fills their place. I try to accept this... all of this and more.
But some days are hard.
Some days I want to scream and cry and hide from the world. Some days I want to look at my daughter and believe that she is just a regular, normal, healthy little girl, at least for a little bit. Some days I wish I could just will her to take more than an ounce at a time from her bottle. Or maybe if I pray hard enough or wish on the right star, her heart will just be healed for good. I hope every. single. day. that medicine will advance fast enough to prolong her life past 20 or 25 or 30 years old.
Some days I have nothing but questions.
Today is one of those days and the only thing I know for sure is this: I'm not ready. I'm not ready to see her struggle after surgery. I'm not ready to see her in pain and not even be able to pick her up and cuddle her. I'm not ready to see her swollen, with tubes coming out of her chest. I'm not ready to watch my baby fight for her life again. I'm not ready to spend day after day just sitting there feeling like we can't do anything for her, searching for some part of her body that isn't covered in wires or bandages or monitors- somewhere that we can caress her at least a little bit so she at least knows we're there. I'm not ready to have to wait for someone to tell us, however many days after that we can finally hold her again and comfort her as best we can, knowing that we can't take away her pain. I'm not ready to watch the numbers on the monitors go up and down and the alarms go off at all hours. I'm not ready for my family to be pulled apart again. I'm not ready to try to explain to Oli and Athan why mommy and daddy are gone and that Jilly needs "to get her heart fixed," because they can't and shouldn't have to understand. Plain and simple: I am not ready.
What I am ready for, though, is for this to be over. For her to come out on the other side, the fighter that she is. I want so badly for this second heart surgery to be done and over with and out of the way so we can have a couple of years to just be the family we haven't really gotten the chance to be yet, before we have to put her through her third surgery. I want this so bad... so for now, I'll put on my big girl panties and a facade that says, "I'm strong!" I'll hide my tears from my boys and go on with our day to day life...
I'm not ready, so for the next couple of weeks I'm going to try to remember to cherish every single smile I get from her. I'll try to leave the stress out of every day and enjoy every day I have at home with all three of my kids together, no matter how crazy they make me. I'm not ready, but by surgery day I will be. Because once this is over, I know it will all be worth it.
Wednesday, April 6, 2011
Thursday, March 31, 2011
Next Surgery: April 26th
Life has been so busy, I haven't had five seconds to think, let alone get to putting a "real" post on here. So, for now, this is it... Sweet Jilly's next surgery is scheduled for April 26th with a whoooole bunch of appointments in between. I will do my best to keep everyone updated. And as always, please keep Jillian in your prayers throughout the next few weeks before surgery and during her recovery after. Thank you :)
Saturday, March 12, 2011
Recovering from G-tube Surgery
Jilly's surgery went well : ) Other than needing oxygen overnight because her sats were low (even for her) she has been great! She was taken off of oxygen at about 6 this morning and has been breathing on her own ever since. She's very hungry- she hasn't eaten in over 24 hours- so we're hoping we can start feeding her small amounts soon. She was put in the CICU (Cardiac Intensive Care Unit) last night, as the whole hospital is on bed alert, meaning they are packed! This was pretty much the only place in the hospital to have any open bed spaces. We are waiting to be moved to CPCU (Cardiac Progressive Care Unit) for tonight and then hopefully home tomorrow.
Tuesday, March 8, 2011
G-tube Surgery, Friday March 11th
We've been home for almost 9 weeks now (WOOHOO!), but Jillian is still unable to keep up with the amount of feeding she needs. After multiple trips to our pediatrician, to Children's Hospital and a disastrous trip to our local ER to have her NG (Nasogastric- a thin tube put in her nose, down her throat and into her tummy) feeding tube placed after being pulled out, we've decided to go ahead with the g-tube (gastrostomy- not to be confused with "gastronomy" which, apparently, is the art and science of good eating...) surgery that will allow us to feed her directly into her tummy. With her second heart surgery quickly approaching- much quicker than JR or I would like to think about- we've decided to go this route in hopes that she will gain weight better. As of Friday she was just under 9 pounds. I'm not sure if there is a weight goal that the doctors would like her to be at, but just like the first surgery, the bigger the better! We're encouraged by the fact that she did so well after her first surgery, despite being teeny tiny, but we still feel like we need to do everything we can to give her the best fighting chance possible, and this is the best way to do that.
I have to admit that electing to put her through an unexpected surgery is wearing on me some. Maybe it's just because I've hardly had time to think about this surgery, because life with three kids 4 years old and under? Is CRAZY! Period. What with changing the baby and feeding the baby and giving the baby her medicines and WHY ARE THE BOYS RUNNING AROUND HALF-NAKED AGAIN?!?!?!, there really just are not enough hours in the day to contemplate much of anything...
In the end we're trying to trust and believe that the amazing doctors that she is lucky enough to have, are steering us in the right direction.
Thursday, February 17, 2011
Our Story
***I'm writing this post in the hopes of inspiring anyone and everyone to become a "Mircale Maker" for the Children's Hospital of Denver. Just $15 a month helps kids like Jillian. You can call :1-800-458-KIDS (5437) to donate ANY amount or go to their website www.alice1059.com . You can also text MIRACLE to 27722 to donate $10 instantly.
Thanks to Children's hospital our oldest son has a younger brother and a younger sister. Thanks to Children's hospital we can hold and hug all three of our kids. Two of our three kids would not be alive today, if not for Children's Hospital.
Our oldest son Oliver was born in February of 2007, a healthy, perfect baby boy. Fifteen months later, in May of 2008 our second son Athan was born. Shortly after birth we found out he had a heart condition that required surgery ASAP. He was trasported to Children's and had surgery at 5 days old and was home only 5 days later. While we were in the hospital with him, we talked so many times about how amazing this place is. It is so sad that a place like that has to exist, but we are so thankful that it does.
When Athan was about 18 months old we decided to try for one more baby. Fast forward to September of 2010- I was 23 weeks pregnant and we knew from a previous ultrasound that this baby was a girl- baby Jillian. Our family was going to be complete! But, the doctors came back with less than good news for us. "This baby has a heart problem," was the doctors exact words. Our world was turned upside down, once again. Three days later, we were in the Children's Hospital Cardiology clinic, somewhere we were already familiar with, thanks to Athan's condition. There, they did an echo on Jilly's heart in utero- which in itself is amazing- and diagnosed Jillian with Hypoplastic Left Heart Syndrome. This condition is absolutely fatal if not treated.
Jillian was delivered at Presbyterian St. Luke's Hospital in Denver on December 15th, 2010 and transported to Children's at three days old. She was only 5 pounds and 15 ounces when she was born, so surgery was a big risk for her. Becasue of her size, we were told to expect to be in the hospital for at least six to eight weeks after surgery. At six days old she underwent eight hours of open heart surgery, performed by the same surgeon that did Athan's surgery. We knew she was in great hands. She did well during surgery and we began the recovery process.
While in the Cardiac Intensive Care Unit (CICU) I am convinced that we had the absolute best doctors and nurses possible. At Children's they don't just take care of their patients, they take care of families too.
By some miracle, Jillian was discharged from the hospital just 2 weeks and 3 days after surgery. She has been home now for almost 6 weeks and besides some feeding issues is doing well. We are expecting her second surgery to be in the next couple of months. We are not incredibly excited about putting her through another surgery, but are so incredibly comforted knowing that she will be cared for at such an amazing hospital.
Thanks to Children's hospital our oldest son has a younger brother and a younger sister. Thanks to Children's hospital we can hold and hug all three of our kids. Two of our three kids would not be alive today, if not for Children's Hospital.
Our oldest son Oliver was born in February of 2007, a healthy, perfect baby boy. Fifteen months later, in May of 2008 our second son Athan was born. Shortly after birth we found out he had a heart condition that required surgery ASAP. He was trasported to Children's and had surgery at 5 days old and was home only 5 days later. While we were in the hospital with him, we talked so many times about how amazing this place is. It is so sad that a place like that has to exist, but we are so thankful that it does.
When Athan was about 18 months old we decided to try for one more baby. Fast forward to September of 2010- I was 23 weeks pregnant and we knew from a previous ultrasound that this baby was a girl- baby Jillian. Our family was going to be complete! But, the doctors came back with less than good news for us. "This baby has a heart problem," was the doctors exact words. Our world was turned upside down, once again. Three days later, we were in the Children's Hospital Cardiology clinic, somewhere we were already familiar with, thanks to Athan's condition. There, they did an echo on Jilly's heart in utero- which in itself is amazing- and diagnosed Jillian with Hypoplastic Left Heart Syndrome. This condition is absolutely fatal if not treated.
Jillian was delivered at Presbyterian St. Luke's Hospital in Denver on December 15th, 2010 and transported to Children's at three days old. She was only 5 pounds and 15 ounces when she was born, so surgery was a big risk for her. Becasue of her size, we were told to expect to be in the hospital for at least six to eight weeks after surgery. At six days old she underwent eight hours of open heart surgery, performed by the same surgeon that did Athan's surgery. We knew she was in great hands. She did well during surgery and we began the recovery process.
While in the Cardiac Intensive Care Unit (CICU) I am convinced that we had the absolute best doctors and nurses possible. At Children's they don't just take care of their patients, they take care of families too.
By some miracle, Jillian was discharged from the hospital just 2 weeks and 3 days after surgery. She has been home now for almost 6 weeks and besides some feeding issues is doing well. We are expecting her second surgery to be in the next couple of months. We are not incredibly excited about putting her through another surgery, but are so incredibly comforted knowing that she will be cared for at such an amazing hospital.
Thursday, February 10, 2011
Prayers for Another Heart Family
There is another heart family that we know of, but have never met. We heard of them through our most favorite nurse at Children's, Gill. Their little girl (I won't give out names, etc. because we don't actually know them) has the same heart defect as Jillian, Hypoplastic Left Heart Syndrome. Like us, they have a blog to keep folks updated on their little girls progress and I have been keeping up with it since we came home from the hospital. Today their little one went through the second of the three surgeries- the same surgery Jillian will be going through in the next few months. From everything I have read on the blog today, she tolerated surgery well and is in recovery.
Although we do not know this family, I feel very compelled to ask for prayers for their little girl. Please just say a quick prayer today for this family- and ALL congenital heart defect families.
Although we do not know this family, I feel very compelled to ask for prayers for their little girl. Please just say a quick prayer today for this family- and ALL congenital heart defect families.
Saturday, February 5, 2011
Time Flies...
When you're chasing after an almost 4 year old, a two and a half year old and have a newborn with some special needs to take care of...
I can't believe we've already been home for four weeks, as of yesterday. And what a busy four weeks it has been. I feel like we're finally starting to get back into some sort of a routine, although it definitely feels like there are simply just not enough hours in the day. Right now, life for JR and me is being lived in 2 to 3 hour blocks, constantly revolving around Jilly's feedings. It is hard and sometimes feels very taxing and almost confining, but she is continuing to make amazing progress (not to mention that when this all began we could only hope to maybe be coming home this week!) so we continue on. She is so, so, SO close to having the feeding tube removed for good. We really only have to use it for one or two feedings a day, unlike when we first came home and it was used with every. single. feeding. Still, we are counting every single milliliter she eats. It's so crazy to think that such a tiny amount can make such a big difference but it does. It seems so tedious, but whatever we're doing, it's working- Jilly is tipping the scales at a hefty 7 pounds 11 ounces these days! Yep, she is now roughly the size of an average newborn and we are SO SO proud of her!
Every week we have an appointment at Children's Hospital in Denver. A lot of times when I tell people this, they see it as a burden. But the fact that we've been home for four weeks, in our own beds, using our own showers and most importantly as a WHOLE family makes it so much easier "having" to drive there every week. Plus, it's kind of a nice break for me... Oli and Athan stay home with JR and Jilly and I have some girl time in the car. Really, she sleeps and I drive, but I guess things really are what you make of them and since I don't have a whole lot of opportunities to have "me time" right now, those drives provide that for me at least once a week : )
We are so proud of how Oli and Athan have adjusted to having a new baby in the house, especially considering the fact that I was gone for 3 1/2 weeks and life was far less than normal for them. They are such amazing big brothers. They are constantly concerned for her and super helpful- although their wanting to help sometimes turns into fights over exactly who gets to help at that particular moment. Just about everyday Oli says, "Her's is cute! Can we keep her, pleeeease!?!?" And Athan says that she is his, "wavorite sister!" (That would be "favorite" for the non-Athan speaking folks out there!)
Somehow adjusting to being a stay-at-home mom of three has been surprisingly... dare I say... easy. Maybe it's because of everything we've gone through, or maybe it's because I had nothing but time to think about our life while I was in the hospital with Jillian, but the transition from two to three has been much smoother than I had expected it to be.
I guess at this point I can summarize by saying that Jillian is doing amazing. She's continuing to grow and thrive and has made her own little place in our family. She's certainly doing her best to show her little personality. JR insists that she is a little diva, but really? Who can blame her after what she's gone through? This is not to say, of course, that we don't have rough days. Life is not all peaches and cream all the time, but I think we've done a decent job so far at least of making the best of a hard situation and staying as positive as we can.
As cliche as it may sound, we are just taking this one day at a time. We're enjoying life as it is as much as we can and reminding each other, and ourselves that these are the only days like this that we are going to have- good or bad. Oli and Athan will only be this age once- right now- and the same can be said for Jilly too. I think we're both conscious of the fact that the days are quickly approaching when we will really start having to think about and plan for and worry about her second surgery, but for now we're just enjoying our family how it is meant to be.
I can't believe we've already been home for four weeks, as of yesterday. And what a busy four weeks it has been. I feel like we're finally starting to get back into some sort of a routine, although it definitely feels like there are simply just not enough hours in the day. Right now, life for JR and me is being lived in 2 to 3 hour blocks, constantly revolving around Jilly's feedings. It is hard and sometimes feels very taxing and almost confining, but she is continuing to make amazing progress (not to mention that when this all began we could only hope to maybe be coming home this week!) so we continue on. She is so, so, SO close to having the feeding tube removed for good. We really only have to use it for one or two feedings a day, unlike when we first came home and it was used with every. single. feeding. Still, we are counting every single milliliter she eats. It's so crazy to think that such a tiny amount can make such a big difference but it does. It seems so tedious, but whatever we're doing, it's working- Jilly is tipping the scales at a hefty 7 pounds 11 ounces these days! Yep, she is now roughly the size of an average newborn and we are SO SO proud of her!
Every week we have an appointment at Children's Hospital in Denver. A lot of times when I tell people this, they see it as a burden. But the fact that we've been home for four weeks, in our own beds, using our own showers and most importantly as a WHOLE family makes it so much easier "having" to drive there every week. Plus, it's kind of a nice break for me... Oli and Athan stay home with JR and Jilly and I have some girl time in the car. Really, she sleeps and I drive, but I guess things really are what you make of them and since I don't have a whole lot of opportunities to have "me time" right now, those drives provide that for me at least once a week : )
We are so proud of how Oli and Athan have adjusted to having a new baby in the house, especially considering the fact that I was gone for 3 1/2 weeks and life was far less than normal for them. They are such amazing big brothers. They are constantly concerned for her and super helpful- although their wanting to help sometimes turns into fights over exactly who gets to help at that particular moment. Just about everyday Oli says, "Her's is cute! Can we keep her, pleeeease!?!?" And Athan says that she is his, "wavorite sister!" (That would be "favorite" for the non-Athan speaking folks out there!)
Somehow adjusting to being a stay-at-home mom of three has been surprisingly... dare I say... easy. Maybe it's because of everything we've gone through, or maybe it's because I had nothing but time to think about our life while I was in the hospital with Jillian, but the transition from two to three has been much smoother than I had expected it to be.
I guess at this point I can summarize by saying that Jillian is doing amazing. She's continuing to grow and thrive and has made her own little place in our family. She's certainly doing her best to show her little personality. JR insists that she is a little diva, but really? Who can blame her after what she's gone through? This is not to say, of course, that we don't have rough days. Life is not all peaches and cream all the time, but I think we've done a decent job so far at least of making the best of a hard situation and staying as positive as we can.
Subscribe to:
Posts (Atom)